I've read some of Shoemaker's work, and I think some of the science may be junky, but I also think he's stumbled onto some potentially interesting clinical markers. MMP9, C3a, C4a, TGF-beta, etc. have been found by a lot of patients to be markedly abnormal. I don't think he's shown a causal link to mold or to the HLA haplotypes, but the (sometimes dramatically) elevated levels of C4a are well documented now in Lyme Disease and somewhat documented in ME.
In
@Gingergrrl 's case, she seems to have actual evidence of stachybotrys. There really isn't much, if any, doubt that this causes serious health problems. In her case, I think mold is probably part of her illness. I'm not sure if the HLA typing matters at all - although it's not inconceivable - but I'm much more persuaded by her combination of symptoms and her positive home testing for stachybotrys. I'm not sure how one diagnoses stachybotrys mediated illness within conventional medicine, but I don't think it's really debatable that it causes health problems.
I think the biomarkers that he's finding elevated/abnormal may actually have a different interpretation, and may be involved in a final common pathway that affects many ME, chronic Lyme, fibro, and other patients on these forums. I've never met him, but everything I read suggests Shoemaker is an arrogant ass in how he treats his patients, and that may have been a big part of his undoing (he lost his medical license for prescribing procrit to ME patients, among other things, although I don't think there actually was an adverse event). I think he pissed off a few too many patients by treating them like crap. I don't care who you are as a doctor or what you know, or what patient you have - treating all patients with basic respect is imperative. The same goes in reverse - doctors should also be treated respect. It's basic humanity. That is not to say one must bow down and defer or never challenge, but it can be done respectfully and scientifically, and one should have an open mind - if they offer a good argument, acknowledge it, and if you can't refute it, realize you have to be able to do so if you are to dismiss it. The same should work in reverse too though. Anyways - I think Shoemaker's arrogance and his attitudes towards his patients were what led to his downfall, but I am not certain his findings are completely devoid of merit. I think parts may be useful.
I happen to know my HLA types (from a full HLA panel/sequencing), and I don't have the 11-3 haplotype.
Dr. Edwards is a scientist who has high medical and scientific standards - which is a good thing. He's skeptical, in a healthy way, as well, and his posts have often made me question assumptions I was making that may not have been justified. This kind of criticism is good. No one is dismissing all the conclusions of Dr. Shoemaker - only saying that it's not ironclad by any means, and we need high quality, replicated science before we pile on and assume he's got the rosetta stone.
One thing I got from Shoemaker's work that I consider valuable, and has made it worth reading, is that there is complement activation in my illness. Maybe that's pure luck on his part - and I'm open on this - but in that sense he did help me. I'm one step closer to putting the puzzle together.
I think we also need to look at the role of C3a, C4a, and C5a, which are anapylotoxins, and activate mast cells. Many symptoms in ME correlate with mastocytosis, yet I have read exceedingly few people reporting a clonal V617F myeloproliferative disease. These anaphylotoxins very possibly could help explain MCS and the extreme sensitivity patients report to drugs, foods, and just about everything. It's important to remember though that this is still theory - most of what I say is just theory! - and it all needs to be experimentally confirmed.
Either way,
@Gingergrrl is suffering, and it seems very likely mold is involved in her case based on the environmental testing she had done. Whether or not Shoemaker's HLA types matter is not clear - but what is clear is that he helped her figure out what was wrong - so for her, it may prove very beneficial.
Lastly, I'm very sorry to hear you're going through all this. I hope that a change of venue will help you to feel better. Maybe it will be a miracle cure for you - we all hope that.
I was eventually able to reach them by phone through persisting. Don't politely wait for days, (I do that too) be the squeaky wheel, or at least keep that finger dialing till you get a human.
